How Strict Do We Need To Be?

[radman]

The newer surgery is done through a laparoscope, so it is minimally invasive, and highly effective. It recreates the lower esophageal sphincter with a strip of stomach muscle. Stomach contents, whatever their pH can no longer reflux into the esophagus.

Bernses, your holistic practitioner has given you dangerous advice. You are definitely not better off without proton pump inhibitors if you have GERD. I did not mean to imply this. Acid reflux definitely causes damage to the esophagus. The proton pump inhibitors stops this acid damage which can lead to scarring, obstruction, ulceration, as well as cancer.

My point was that long term use, while it does prevent the acid damage, may not ultimately prevent all the cancers, and it has other problems, such as the gastrin problem I mentioned. Just stopping the prevacid without an effective alternative treatment for the GERD, though, is dangerous. The surgery is one such effective alternative treatment. Another avenue that should be explored is testing for H. pylori, the bacterial infection responsible for much acid-peptic disease. Treatment of H. pylori (if present) with antibiotics may also eliminate heartburn and reflux sypmtoms.

In my own case the reflux symptoms stopped with treatment of my celiac with gluten free diet. I know longer need any prevacid. I realize that not everyone with celiac has resolution of reflux with diet, but some do. If the reflux doesn't stop with gluten free diet, and H. pylori is not present, you might be stuck with long term proton pump inhibitor use. In this case the surgery is a good option, but you need to see a surgeon with plenty of experience with the laparoscopic technique.

[megsylvan2]

Oh, I reread what you said and I see what you meant now - eventhough patients are taking proton pump inhibitors to neutralize the acids, the reflux is still there and the stomach contents (though now neutralized) are still invading the esophagus and may still be causing problems. Thanks for setting me straight on that. Well, I am making appt with new gastro and will investigate this and learn about this procedure. Already been checked for h pylori.

You say that your symptoms have disappeared. How would you know that you didn't still have silent reflux?

[Canadian Karen]

I would assume that the GERD has disappeared naturally for him with the gluten-free diet, whereas if it only disappeared with the assistance of medicine to "mask" the GERD, then the probability of continued damage being done would still be there.

Karen

[shayesmom]

The reason I would do all patients and not just the obvious GI related malignacies is because gluten really seems to be a systemic toxin, for one thing, and also because even if these folks don't have a gluten related malignacy there is some research that has show many cancer patients do better on a gluten free diet. I believe this is because they were gluten intolerant and didn't know it. There is so much added stress to the body and mind when one is fighting a disease of this type that many undiagnosed gluten intolerant people might be able to tolerate the therapies better if gluten wasn't increasing their discomfort. Gluten intolerant people also tend to suffer an excaberation of problems when stressed and the gluten intolerant may also become full blown celiac with their symptoms be attributed to the therapies. Just a thought.

Raven,

I believe that you are absolutely correct in saying that all cancer patients would do better on a gluten-free diet. My father had an adenocarcinoma of unknown primary and he shocked many of us with his response to treatment and the quality of life he was able to acheive. Of course, his diet was much more restricted than just gluten. I think it's imperative to avoid casein (and a few other things) as well. Both can act as neurotoxins in susceptible individuals and just compound the depression that follows a cancer diagnosis.

There are a few cancer doctors out there that are employing the use of an "adjusted" diet in conjunction with cancer therapies. Dr. Keith Block of the Block Institute is one. On the fringe of cancer therapy, Dr. Nicholas Gonzalez. Both are using dietary approaches in conjunction with therapy (though Gonzalez is employing much more controversial methods than that). I have wondered if perhaps the reason their therapies seem to have success where more traditional routes sometimes fail is that they are touching upon underlying conditions of gluten/casein intolerances....and aren't really realizing it. (Not criticizing their therapies or saying that their success is a result of fluke, just thinking that underlying Celiac may not be part of what they are consciously treating). Many of the docs employing nutritional approaches are simply saying to avoid refined flour. This may have changed in the past year or so since my father died, but I do check in with the people on a cancer group I am in and it seems this still holds true.

In any case, I think that Radman testing even a small portion of his patients is a step in the right direction and I think he may make a wonderful and significant difference in his patients' lives. Not just to get them through therapy, but to make a positive and daily difference for the length of a lifetime. In the meantime, let's hope that testing methods for Celiac improve and that gluten sensitivity is able to be tested for with more accurate methods and results. I imagine that those two things would help many doctors in healing their patients.

[ravenwoodglass]

I think this is a really good point!!!!!!! Gluten free seems to help many conditions- depression, autism, IBS and other digestive issues, chronic fatigue and now you mention cancer.

I don't think it will neccessarily help the disease cancer itself, but there are so many undiagnosed celiacs out there and the ones who are undiagnosed or gluten intolerant run a very real risk of the stress of the tretment causeing their symptoms to get worse. I do believe that celiac and gluten intolerance are a contributing factor in the development of many more cancers than the medical community may realize. But I don't think the gluten-free diet is a cure for cancer, I do however think that with the numbers of us un or mis diagnosed that running at least a panel on everyone in this country would help our morbidity rate a great deal. Soy was deemed to be wonder food at one time because the incidence of certain cancers in Japan was much lower than ours. Japan now has a cancer rate that rivals the US (Radman will correct if I am wrong I am sure), this spike has been noticed in the recent past and is directily attributable to the Americanization of their diet. There is a reason why the US has some of the highest cancer rates in the industrialized world, our overprocessed, gluten filled (even added back in when it's not needed like with Corn Pops) food is one of them. Somewhere down the pike the manufacturors found out, I believe, the addictive nature of this substance. Gives them a good reason to add it to everything, my biggest shock was finding it added to fruit juice, why unless you want your customers to really, really want your juice.

[covsooze]

Thanks for this info about GERD. I need a real wake up call about my GERD as I know I eat too much fatty stuff. It has been a bit better since being gluten-free, but I need to stop eating those yummy gluten-free cakes!

One thing I am wondering - could palpitatins/ being really aware of my heart beat be a symptom of GERD? It was really bad in the run up to my diagnosis and then improved tremendously when I went gluten-free. The past couple of days, it's happened after every meal, and I'm convinced I'm not being glutened, so it's concerning me a bit. Any thoughts?

[jerseyangel]

One thing I am wondering - could palpitatins/ being really aware of my heart beat be a symptom of GERD? It was really bad in the run up to my diagnosis and then improved tremendously when I went gluten-free. The past couple of days, it's happened after every meal, and I'm convinced I'm not being glutened, so it's concerning me a bit. Any thoughts?

I get this, too. Very aware of my heart beating. Makes me very nervous. My GP said that this symptom alone is not a reason to worry--but I kinda still do. I never had it before I was diagnosed Celiac--sick as I was, I didn't have the palpatations. After I was gluten-free for several months, I developed reflux and the palpitations started up at about the same time. I think mine have to do with the reflux, not gluten related. I have checked my BP with my cuff at home when I would get the palps.--it was never any higher than usual. I don't notice them occuring with a gluten reaction.

[Fiddle-Faddle]

The times I've always been aware of my heart beating (besides for exercise, of course) is when I have too much thyroid in my system or when I skip lunch by mistake.

[Guest BERNESES]

radman- Just to clarify- I think you were referring to meg when you talked about the holistic practicioner. My GI and all the doctors I've seen (so far) have told me to stay on the Nexium which I will do because without it, I haave horrible GERD. The surgeon said that I need to be scoped annually because even though the Nexium reduces the acid, it does not prevent reflux. In other words, as someone else pointed out- you still have GERD because of the physiological aspect.

I worry though, as I am about to have my gall bladder removed, about scar tissue. My MIL was telling me that essentially her mom died of complications due to multiple abdominal surgeries (appendix, gall bladder, and I'm not sure what else). She developed a leak or a tear somewhere in her intestines which they could not find and repair because she had so much scar tissue that things couldn't be seperated. This wwas before laprascopic surgery so do you know if laproscopy, being less invasive, makes a difference in scar tissue?

[jenvan]

Thanks for this info about GERD. I need a real wake up call about my GERD as I know I eat too much fatty stuff. It has been a bit better since being gluten-free, but I need to stop eating those yummy gluten-free cakes!

One thing I am wondering - could palpitatins/ being really aware of my heart beat be a symptom of GERD? It was really bad in the run up to my diagnosis and then improved tremendously when I went gluten-free. The past couple of days, it's happened after every meal, and I'm convinced I'm not being glutened, so it's concerning me a bit. Any thoughts?

Read this short thread on arrythmias... Open Original Shared Link I post my own experience and answer on the issue...and there are some other thoughts too.

radman- Just to clarify- I think you were referring to meg when you talked about the holistic practicioner. My GI and all the doctors I've seen (so far) have told me to stay on the Nexium which I will do because without it, I haave horrible GERD. The surgeon said that I need to be scoped annually because even though the Nexium reduces the acid, it does not prevent reflux. In other words, as someone else pointed out- you still have GERD because of the physiological aspect.

I worry though, as I am about to have my gall bladder removed, about scar tissue. My MIL was telling me that essentially her mom died of complications due to multiple abdominal surgeries (appendix, gall bladder, and I'm not sure what else). She developed a leak or a tear somewhere in her intestines which they could not find and repair because she had so much scar tissue that things couldn't be seperated. This wwas before laprascopic surgery so do you know if laproscopy, being less invasive, makes a difference in scar tissue?

Beverly--

Were you diagnosed with stones or a diseased gallbladder via ultrasound. I'm sure you've posted it in the past--but can't remember

[julie5914]

This is the first topic I've ever seen get to 29 pages! Congrats!

The main topic question is one I've asked myself since I started this diet. I read somewhere that as little as 1/48th of a slice of bread can cause a reaction, so I don't like stuff to touch. I wash pots in between, but I don't have my own pots or silverware. I don't use gloves or wipe down stuff and I still make gluten cakes for other people. (I still let my dogs kiss me on the face too, even after they've eaten - don't care if it's gross )

However, last time my blood work was checked, it was still through the roof. I get stricter and stricter - I say, ok, no more eating out unless I get a salad, no more eating stuff with natural flavors without calling first, but I wonder what it will take to get those numbers down.

Some celiacs apparently have no symptoms - I assume they should be just as strict as everyone else - just harder for them to know.

I kinda see it like arsenic. You could have a little tiny bit every now and then without getting killed, but you would always feel just slightly crappy. Who wants that?

I have enough accidents that I would certainly do a lot of damage if I had a little bit every now and then knowingly. I would certainly appreciate more research though - who knows, maybe there are different levels of sensitivity - there are for allergies right? I don't like being this picky - I wish I could just avoid and not trouble other people so much, but until there is more knowledge on it (and until my lab work gets normal), I will aim for no more than 1/48 of a slice of bread.

[Guest BERNESES]

Beverly--

Were you diagnosed with stones or a diseased gallbladder via ultrasound. I'm sure you've posted it in the past--but can't remember

Yes- they found stones via a CT scan last year while they were trying to diagnosse me and then I had another ultrasound a month ago. My GI thinks it may explain the nausea i have as that can be one sign of gall stones (for some people it's their only symptom). Also, since I'm hoping to get pregnant they want to remove it as pregnancy usually exacerbates gall bladder issues.

[VydorScope]

I kinda see it like arsenic. You could have a little tiny bit every now and then without getting killed, but you would always feel just slightly crappy. Who wants that?

Ever eat an apple? You know they contian a deadly posion, one thats deadly to ALL HUMANS, right? Sooo howcome your not dead? Cause the amount is so small it does not effect you.

Personaly I do not sess why gluten would be different, the problem I see is HOW the heck do you find that lower limit ? There appears to be no reliable test to tell you if your being impacted, and we alreyad know symptons are a poor indicator. So why I FULLY believe there is a lower limit, I just do not see an safe OBJECTIVE way to find it, esply since I would expect it to be different for everyone.

[radman]

Well it's been over 2 weeks now gluten free.

My partner brought in our Tuesday morning tradition of Einstein bagels with cream cheese for the whole staff. I had to sit there and watch everyone eat 'em. I sure miss my toasted everything bagel with sun-dried tomato cream cheese. Came close to caving, but I held out and munched on some M and M's (great breakfast, huh?).

Then this evening I had to make dinner for the kids, and of course I selected my old favorite, and a fav of dad's making dinner everywhere, Spaghetti-O's (with little meatballs of course).

I love those things, but again I was strong. Tempted but strong.

My normal, nontoxic bowel habits have kept me on the straight and narrow.

Next week though, I may give myself a little challenge, perhaps a bagel, and see how I react.

The amount of gluten I can tolerate is still something I intend to find out. For those who are worried about "silent" damage, I am not concerned for my personal situation. I had clear GI symptoms with gluten and they went away without gluten. I'm sure I will get them back at whatever "dosage" of gluten my gut cannot tolerate. Now if I had no symptoms intially, and came upon my diagnosis based on screening, or a family member with the disease leading to testing, I would be worried. In that situation my celiac would be silent, and I could not rely on my symptoms to guage the damage.

But since my symptoms are clear, I think in my case they are a reliable indicator.

Hey Bernses, sorry about the mistake. And yes, the laparoscopic technique causes much less scarring, I wouldn't worry about this. Good luck with the surgery, and

[shayesmom]

Well it's been over 2 weeks now gluten free.

My partner brought in our Tuesday morning tradition of Einstein bagels with cream cheese for the whole staff. I had to sit there and watch everyone eat 'em. I sure miss my toasted everything bagel with sun-dried tomato cream cheese. Came close to caving, but I held out and munched on some M and M's (great breakfast, huh?).

Then this evening I had to make dinner for the kids, and of course I selected my old favorite, and a fav of dad's making dinner everywhere, Spaghetti-O's (with little meatballs of course).

I love those things, but again I was strong. Tempted but strong.

My normal, nontoxic bowel habits have kept me on the straight and narrow.

Next week though, I may give myself a little challenge, perhaps a bagel, and see how I react.

The amount of gluten I can tolerate is still something I intend to find out. For those who are worried about "silent" damage, I am not concerned for my personal situation. I had clear GI symptoms with gluten and they went away without gluten. I'm sure I will get them back at whatever "dosage" of gluten my gut cannot tolerate. Now if I had no symptoms intially, and came upon my diagnosis based on screening, or a family member with the disease leading to testing, I would be worried. In that situation my celiac would be silent, and I could not rely on my symptoms to guage the damage.

But since my symptoms are clear, I think in my case they are a reliable indicator.

Hey Bernses, sorry about the mistake. And yes, the laparoscopic technique causes much less scarring, I wouldn't worry about this. Good luck with the surgery, and

Congrats on hitting the two week milestone!

Aye carumba! M & M's vs. bagels early on in the gluten-free diet. Most people would have caved! The Enjoy Life brand bagels aren't too bad. Definitely don't compare when consumed too soon after having had the real thing. Maybe that's individualistic though.

Good luck on your gluten challenge. Having found your sensitivity in the first place, it should also prove interesting to see just how much (or how little) it takes to get the symptoms again. Out of curiosity....have you developed a "plan" as to how you are going to gauge this and how long you will be gluten-free between "experiments"?

I was also wondering if anyone else here got a really bad cold or illness within the first 7 days of having gone gluten-free. I've had 7 people tell me that they got horribly sick with a sinus cold or a respiratory infection right after starting the diet. It could be completely coincidental but I thought that I would ask since it's been so consistent in the people that I know and talk to. Symptoms of illness start between days 5-7, no earlier or later. I found it really odd as the arthritic patients who this has happened to usually see very noticable reduction in inflammation on day 4. Anyway, I was just curious if this was some weird Ohio "weather" thing or if others have had the same bizarre experience.

[megsylvan2]

I really miss a good everything bagel or sesame seed bagel too... Mmmmmm...

Now let me see if I have this straight. Radman, you feel that since you noticed mild GI systems that stopped when you went gluten-free, that you don't feel you have any villi damage, and that if you find the level at which you ingest gluten up until you notice GI symptoms, that would essentially be your level of gluten tolerance?

I understand that you are not dealing with anybody else's experiences but you own. But you feel that for yourself this would be acceptable, right? So essentially your line of thinking is that, because you do not have silent Celiac, the point at which your gut complains is the point at which you feel damage could begin to occur, and up until then you would have achieved a sort of homeostasis? Is it possible that, for some people, the body may be able to handle so much gluten without going into a tailspin? Interesting.

I mean, I wonder these things too. For me, it's hard to accept that I've been seemingly fine all my life, and then suddenly I'm Celiac (Think Little Shop or Horrors song!) and can never have gluten again without doing horrible damage to myself? That's hard to accept.

Admittedly, I haven't done all the reading on this yet, so maybe reading some more of the studies on it, and books like Dangerous Grains may help. And maybe part of it is that I need to experience for myself what many here have said, that once you are gluten-free, it seems to take less and less gluten to cause reactions, so I would want to wait to see if that occurs.

But, I don't know. By the same token, my insides were pretty messed up just based on how I felt - I was in agony. I don't want to go there again. And I feel like it would take a while to heal and fix that. And if Leaky Gut is real, I think it would take a while to fix that too. And because of my age, and other issues - it might not be a good idea for me. But once in awhile - a slice of pizza. Would it really be so harmful if I can tolerate it?

I'm not saying anyone is saying I should go one way or the other. I'm just thinking out loud here the things that I think to myself. Pardon my ignorance on the subject, everyone. I know I'm not well read on the subject yet, but from what I've read so far, it also doesn't seem to me that there is a whole lot of agreement in the medical community either. So it seems we are left to come to our own conclusions to some extent.

[tiredofdoctors]

Sorry about the bagels, radman. We have a small deli that makes the BEST bagels! I don't even go NEAR that shopping center anymore! The news about M&M's for breakfast: My sister-in-law, who does research at the VA hospital here, decided to find out the value of eating almonds to lower cholesterol. So, instead of her usual morning breakfast of M&M's and a Coke, she changed to Almond M&M's and a Coke. Lowered her cholesterol 22 points in 1 month! She changed absolutely nothing else!!

[Fiddle-Faddle]

Well it's been over 2 weeks now gluten free.

My partner brought in our Tuesday morning tradition of Einstein bagels with cream cheese for the whole staff. I had to sit there and watch everyone eat 'em. I sure miss my toasted everything bagel with sun-dried tomato cream cheese. Came close to caving, but I held out and munched on some M and M's (great breakfast, huh?).

Then this evening I had to make dinner for the kids, and of course I selected my old favorite, and a fav of dad's making dinner everywhere, Spaghetti-O's (with little meatballs of course).

I love those things, but again I was strong. Tempted but strong.

My normal, nontoxic bowel habits have kept me on the straight and narrow.

Next week though, I may give myself a little challenge, perhaps a bagel, and see how I react.

The amount of gluten I can tolerate is still something I intend to find out. For those who are worried about "silent" damage, I am not concerned for my personal situation. I had clear GI symptoms with gluten and they went away without gluten. I'm sure I will get them back at whatever "dosage" of gluten my gut cannot tolerate. Now if I had no symptoms intially, and came upon my diagnosis based on screening, or a family member with the disease leading to testing, I would be worried. In that situation my celiac would be silent, and I could not rely on my symptoms to guage the damage.

But since my symptoms are clear, I think in my case they are a reliable indicator.

Hey Bernses, sorry about the mistake. And yes, the laparoscopic technique causes much less scarring, I wouldn't worry about this. Good luck with the surgery, and

I'm waiting with bated breath to see what happens, and what you think about it!

I've been gluten-free since January, and was planning on a gluten challenge sometime this month (maybe a piece of matzoh?!). I had lunch at Ikea, and had part of a slice of cheesecake (cutting off the crust, but I'm pretty sure some crumbs got in)--and had diarrhea starting about 5 hours later and lasting the rest of the evening.

Was it the gluten? (Most of you will shout, "of course, you idiot!") Could it possibly have been something else?

The thing is, the only stomach symptoms I ever had before going gluten free was mildly mushy stools and a lot of bloating. I didn't have the bloating this time. How do we know how to interpret the results of our challenge?

If someone "normal" (as in, not Celiac) went off gluten, would they then react to it when going back on it?

About getting sick after going off gluten, sorry, I didn't at all. I felt great!

I wonder if anybody makes canned gluten-free pasta and meatballs?

[VydorScope]

Was it the gluten? (Most of you will shout, "of course, you idiot!") Could it possibly have been something else?

Was it gluten, MAYBE. Was it something else? MAYBE. Are you avioding any other foods? When you do your challange you need to pick gluten from as pure a souce as you can. Prehaps oragnic wholewheat bread, or somthing like that. You need to at least aviod the other top allergins, esply dairy. Also you need to try to do it when your not sick and no one around you is sick. The more you can islolate the beter you are.

[ravenwoodglass]

Was it gluten, MAYBE. Was it something else? MAYBE. Are you avioding any other foods? When you do your challange you need to pick gluten from as pure a souce as you can. Prehaps oragnic wholewheat bread, or somthing like that. You need to at least aviod the other top allergins, esply dairy. Also you need to try to do it when your not sick and no one around you is sick. The more you can islolate the beter you are.

This is a good point but I would use something along the lines of triscuits or cream of wheat. With doing a challange with a bread product you may react to the yeast, or the sugars, or the possible dairy or???. When challenging also be sure to add the food for a week in pure form as intolerances are a delayed reaction and if you eat the suspect food one day and don't react for 4 it makes it hard to pinpoint the reaction to the substance.

[Guest BERNESES]

As far as people reacting to gluten when they are not intolerant, but have removed it from their diet, I can only speak for my hubby. He pretty much eats what I cook (gluten-free of course) and now when he eats gluten (like a piece of pizza or Chinese food) he tells me he doesn't feel too hot, lies down on the couch and occasionally gets cold sweats. Could be coincidence.... (or maybe it's all in his head ). I've just thought it was interesting.

[VydorScope]

This is a good point but I would use something along the lines of triscuits or cream of wheat. With doing a challange with a bread product you may react to the yeast, or the sugars, or the possible dairy or???. When challenging also be sure to add the food for a week in pure form as intolerances are a delayed reaction and if you eat the suspect food one day and don't react for 4 it makes it hard to pinpoint the reaction to the substance.

Yeast is a good point, but I dont think store bread has mlik in it? I dunno I dont bother to read lables on wheat bread heh.

[nikki-uk]

As far as people reacting to gluten when they are not intolerant, but have removed it from their diet, I can only speak for my hubby. He pretty much eats what I cook (gluten-free of course) and now when he eats gluten (like a piece of pizza or Chinese food) he tells me he doesn't feel too hot, lies down on the couch and occasionally gets cold sweats. Could be coincidence.... (or maybe it's all in his head ). I've just thought it was interesting.

Me too!

I am totally gluten-free now but it's my hubbie who is the coeliac.

I have posted about this effect on another thread (can't remember what category it's in but it's titled 'Gluten Free but don't have to be')

Although I don't get any G.I issues,gluten has made me feel nauseous,break out in a sweat,palpitations and a weird tingling on my tongue.

I've also thought it's psychosomatic (sp?)but it happens every time I've tried to sneak a bit of gluten in!?

Another strange thing,I thought I'd find it really hard,but you know what-I don't miss it at all

Mmmm,not sure why,-but for the time being I'm steering clear!

[VydorScope]

Me too!

I am totally gluten-free now but it's my hubbie who is the coeliac.

I have posted about this effect on another thread (can't remember what category it's in but it's titled 'Gluten Free but don't have to be')

Although I don't get any G.I issues,gluten has made me feel nauseous,break out in a sweat,palpitations and a weird tingling on my tongue.

I've also thought it's psychosomatic (sp?)but it happens every time I've tried to sneak a bit of gluten in!?

Another strange thing,I thought I'd find it really hard,but you know what-I don't miss it at all

Mmmm,not sure why,-but for the time being I'm steering clear!

The only way to know would be a BLIND test. Have some one you trust to get it right prepair some random meals ofr you and not tell you which have gluten in them. See which you react to. Reaction the the gluten-free ones, and nto the gluten ones, would indicate that its likly all in your head. Perfect score on gluten-free vs not gluten-free would indicate a real reaction.

[Guest BERNESES]

Although I don't get any G.I issues,gluten has made me feel nauseous,break out in a sweat,palpitations and a weird tingling on my tongue.

That's exactly what happens to him- he mentioned the tongue thing last night. Intriguing? He was diagnosed with a wheat allergy when he was younger (multiple allergies actually) but according to his pediatrician years ago- he outgrew them. maybe not?